Monthly Archives: February 2012

Last night and the night before, Future Cult Leader had a hard time sleeping. Sleep deprivation is a no-no in this one. Then, today at school, Future Cult Leader got her hands on something with artificial food dyes and ate it. Artificial food dyes make her bonkers. In fact, under the right conditions they practically negate her medications.

You see that part about the tired? HEY LOOK, IT’S THE RIGHT CONDITIONS.

It’s hard, when you’ve been doing all this extra stuff that moms with typical kids don’t do, to feel like all your effort has been for nothing. And that’s exactly how I felt today. It’s all for nuthin’. Dammit.

I have 2 choices: I can curl into a corner and cry and eat lots of crappy food. (Done.)

Or.

I can dance.

But, I’m exhausted. So I’ll do the next best thing: watch a video of me dancing that I’m going to (kind of) show to you. I apologize that it’s just the link. It’s too late to upload it to YouTube and since I’m cheap and use free wordpress.com I don’t have some of the nifty features other blogs have. Then again, those blogs don’t have this video. Ha!

While I was at our favorite national big box store picking up some new granny panties killing some time on the way to pick up Future Cult Leader from school, I found a mini spiral notebook in one of their dollar bins. As one of Cult Leader’s favorite past times is writing the Great American Novel, I bought one so I can live off her royalties encourage her love of the written word. After I presented it to her, this happened:

Monsieur Stoic and I were in the kitchen, discussing how to end world hunger while fixing macaroni and cheese for lunch, when Evil Genius tip toes in. In her arms she is cradling her almost-as-big-as-she-is automatic Nerf dart gun, fully loaded. She is wearing a mischievious grin. Before we can register what is going on, she aims the gun at Stoic (as best as she can, considering she has to cradle it like a baby) and pulls the trigger. Synthetic material flies everywhere as she cackles maniacally, turning her body around so she is spraying the entire kitchen with suppressive styrofoam fire. Stoic jumps for cover so I spring into action, guiding Evil Genius into another position so he is assaulted by velcro tipped missiles. When the dust settles, our 2 1/2 year old daughter is giggling wildly, crowing in triumph. “I got you! I got you, Dad!” I cannot stop laughing. Stoic is shell shocked and appalled. “You little punk, I loaded that for you earlier and you had no interest in shooting!”

The last several months have been whirlwind of…well, stuff. School started and since I was trying to be Super Bad Ass Mom Extraordinaire, I signed up to work my flat tuches off for the school. A position on what amounts to a PTO’s board (which sounds more important than it is), taking over an art literacy program, volunteering to work with kids in Future Cult Leader’s classroom, and various other projects meant I was often busy. And, you know, mom stuff: clean the house, hang with the kids and Monsieur Stoic, attempt to have a social life, keep in touch with extended family, hookers and blow, advise the president. You know, business as usual.

Then something happened.

I’ve experienced joint pain for almost a year. It comes and goes, but it kept getting worse. Then it got baaaaaaaad. Like, I couldn’t button and zip my pants bad. I couldn’t hold hands with my husband. I couldn’t squeeze the damn toothpaste tube. And there were times I was so stiff in the morning I felt like I was going to shatter when I walked down the stairs. And tired. ALWAYS tired. So I did what any rational person would do. I imagined myself on the show House MD and decided I was going to die of some obscure disease.

Not really. I called up my doctor who gave me a referral to a rheumatologist. The rheumatologist listened to my complaints, checked my x-rays, looked over my body, and told me I have rheumatoid arthritis.

I had already suspected as much, since both my mother and grandmother have RA, but I was kinda hoping for an explanation of the pain in each of the joints that were hurting. I was more or less flattened by the news. RA is some bad, bad shit. It’s not like normal arthritis (osteoarthritis) where the cartilage in your joints break down from wear and tear and injury. It’s an autoimmune disorder where your body attacks the lining of your joints, leading to painful swelling, joint deformity, and erosion of the tissues and bones around your joints. Even the small joints in your ears can be affected. It also affects your organs: skin, eyes, heart, lungs, just to name a few. It also causes extreme fatigue. Osteoarthritis looks like the kid who gets picked last in gym class in comparison to the big, hulking bully who steals your lunch money on the playground that is RA.

The weeks following my diagnosis were dark. I was already struggling with not being able to go at the speed I was used to, which was a blow in and of itself. But finding out that this wasn’t something that would go away with time? Depressing as hell. I was already aware of some of the risks after watching my mother deal with it for the last 10 years, but I wanted to take charge of my disorder. So, I did some research. Let’s face it, worst case scenarios aren’t exactly the greatest pick me up. And then there were the reactions of the people around me. Don’t get me wrong, I have a lot of supportive and understanding people in my life. But man, the sucky responses can really get to you. I got everything from telling me not worry and changing the subject to making it about them to people avoiding me like the plague. Stoic wouldn’t even talk about it until I picked a fight with him over it.

Within a few days, the medications started fucking with me. After a couple weeks they went from fucking with me to waterboarding me on the rack. Mental and mood changes were listed as side effects and oh yeah, I had those. I got all spun up. Couldn’t sleep (there wasn’t a sleeping pill in the world that could knock me out), couldn’t focus, itching to move around, extremely irritable. And I was worried about everything. That means one of two things:

–my anxiety was my puppet master

OR

–I was headed into a hypomanic state.

My therapist, who is totally my hero, jumped right in and prescribed another anti-psychotic. Which was great and all, except it’s extremely sedating. So on top of the joint pain and fatigue, I was so groggy and slow and felt like a total moron. I was sleeping 10-12 hours a day and had basically abdicated my role as a parent.

That was a few weeks ago. I’m doing better now. My new anti-psychotic dosage was reduced, so while I’m still pretty groggy in the morning I’m at least functional. I’m more at peace with my diagnosis and had a really good visit with my rheumatologist this week. My RA is early and mild, which means that joint damage will be minimized. The medications have already improved my quality of life. Even better, they could still take another month to show me what they can really do. Since they’re working so well right now, we don’t need to think about the heavy hitting drugs that can cause cancer and wipe out my immune system. I have a good prognosis and a good chance for remission.

Despite the good news, sometimes I get really angry because, hi, a couple of chronic mental disorders and now a chronic, systemic autoimmune disease? WTF did I do to deserve all this?! Most days, though, I’m okay with life. It’ll get better. I will get better.

So.

I apologize to my readers (all 30 some of you!) for my absenteeism. Hopefully I don’t have to start sucking up to you for forgiveness.